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Pregnancy & children
Ending a pregnancy for fetal abnormality
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The baby and the diagnosis :
Feelings about the pregnancy
Early scans and blood tests
Diagnostic tests - amnio and CVS
The 18-20 week scan and further tests
Understanding the baby's diagnosis
Deciding to end the pregnancy :
Looking for information and support
Ending the pregnancy for the baby's sake
Ending the pregnancy for family & personal reasons
Finding out how the pregnancy will end
The impact of the decision
Ending the pregnancy :
Signing the consent form
Ending the pregnancy surgically
Ending the pregnancy by induction
Going through labour and birth
Deciding whether to see, hold and name the baby
Photographs and other mementoes of the baby
Treatment, care and communication
Losing the baby :
Leaving hospital and going home
Deciding whether to have a post-mortem
Saying goodbye to the baby - sevices & funerals
Coping with bereavement - women's experiences
Coping with bereavement - men's experiences
The effects of ending a pregnancy :
Counselling and other kinds of support
Support groups
Deciding whether to have another baby
Men's ideas about their role in ending a pregnancy
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Ending a pregnancy for fetal abnormality
Subject index
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Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 29
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She felt worried about her baby's possible disfigurement and wasn't sure at first whether or not to look at her.
Their 2nd pregnancy: mother had gestational diabetes so had regular blood tests and scans throughout pregnancy. Amniocentesis at 16 weeks was clear. Scan at 30 weeks indicated neural tube defect. Detailed scans indentified alobar holoprosencephaly. Pregnancy was ended by feticide and induction at 31 weeks. Parents declined post mortem. They have had another baby since the termination.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 31
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She had the impression that she should see her baby but found she was shocked by aspects of her appearance and is still unsure whether it was the righ
Mother's 1st pregnancy (father's 4th - he has 3 children from previous marriage). IVF pregnancy, some bleeding, 8-week dating scan at IVF clinic. 12-week scan no problems found. 20-week scan detected choroid plexus cysts (soft markers for Edwards' syndrome). Specialist cardiac scan indicated heart defects- sent for amniocentesis. Pregnancy ended at 22 weeks by feticide and induction. They have had another baby since termination.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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1-2 years since pregnancy ended
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Interview 17
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Explains why she decided not to hold her baby after she was born.
After birth of first child she had 3 miscarriages. 4th pregnancy did not 'feel right'. Nuchal scan arranged privately, baby was small for dates. Had two more scans to investigate baby's size and due date. Specialist scan at 21 weeks, then heart scan and then amniocentesis. Doctors suspected diaphragmatic hernia but amnio identified chromosomal abnormality (Wolf Hirschhorn syndrome). Pregnancy was ended by feticide and induction at 24 weeks. (Since the interview she has had another baby.)
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 32
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He was very moved by the sight of his daughter and felt relieved that the doctors' diagnosis was right.
His wife's 3rd pregnancy: 20-week scan detected anomalies - baby's kidneys and stomach couldn't be seen. Specialist scan revealed baby had multiple abnormalities; parents agreed to amniocentesis which confirmed baby's problems were not inherited. Pregnancy ended at 22 weeks by induction. Since termination he and his wife (EAP07) have had another baby.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 05
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Explains how when she ended her first pregnancy she decided not to see or hold the baby.
Her 2nd pregnancy: 20-week scan detected neural tube defect. Specialist scan confirmed encephalocoele. Pregnancy ended at 23 weeks by feticide and induction. Post mortem identified Walker-Warburg syndrome - a genetic abnormality. 3rd pregnancy: nuchal scan revealed baby had anomalies, and by 19 weeks scan showed hydrocephalus. Pregnancy ended at 20 weeks by induction. Walker-Warburg syndrome identified at post mortem. Both parents are carriers of recessive gene. 4th child born in 2004.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 05
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Describes seeing her second baby and how even though the baby didn't look as she hoped, the decision had been right for her.
Her 2nd pregnancy: 20-week scan detected neural tube defect. Specialist scan confirmed encephalocoele. Pregnancy ended at 23 weeks by feticide and induction. Post mortem identified Walker-Warburg syndrome - a genetic abnormality. 3rd pregnancy: nuchal scan revealed baby had anomalies, and by 19 weeks scan showed hydrocephalus. Pregnancy ended at 20 weeks by induction. Walker-Warburg syndrome identified at post mortem. Both parents are carriers of recessive gene. 4th child born in 2004.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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3-4 years since pregnancy ended
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Interview 16
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Describes how she instinctively wanted to hold and touch her baby and explains how she and her husband kept him with them overnight and had him blesse
Her 4th pregnancy: experienced sickness during first trimester and felt unwell. Blood test at 16 weeks detected Down's syndrome. Amniocentesis confirmed Down's. Pregnancy ended by induction at 19 weeks. Following the termination she had a stillbirth. (In 2005 she had another baby.)
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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1-2 years since pregnancy ended
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Interview 35
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He and his wife didn't mind seeing their baby wrapped up in a shawl but thought it was inappropriate to put her in a pink dress.
Father of 1 child. 2nd pregnancy: wife felt unwell throughout pregnancy. Nuchal scan at 12-weeks arranged privately, advised to have CVS - no problems detected. 20-week scan found baby had heart problems. Specialist cardiac scan confirmed baby had multiple problems in heart, stomach and spleen. Pregnancy ended by feticide and induction at 22 weeks. Post mortem confirmed multiple abnormalities. He is undecided about whether he wants another baby.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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1-2 years since pregnancy ended
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Interview 13
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She felt guilty that she hadn't said goodbye properly to her baby so contacted the bereavement midwife who arranged for her to see him once more.
Her 1st pregnancy: heavy bleeding in first trimester caused by ovarian haematoma. 20-week scan found insufficient amniotic fluid - possible premature rupture of membranes. Parents advised that baby could have lung damage/ breathing difficulties - uncertain prognosis. Pregnancy ended by induction at 23 weeks. Post mortem indicated that baby's development not affected by rupture of membranes. Twins born since termination.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 22
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Decided she wanted to see her baby after she had left hospital and felt much happier once she had seen him though she didn't feel able to pick him up.
Her 1st pregnancy: some bleeding and sickness, scan at 7 weeks confirmed pregnancy. 12-week scan normal. Triple test at 19 weeks, found raised AFP levels. 20-week scan identified hole in baby's heart and shortened limbs. Specialist scan found 2 holes in heart and abnormalities in limbs, bowel and brain- sent for amniocentesis. Pregnancy ended by induction at 21 weeks. She has had another baby since termination.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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8+ years since pregnancy ended
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Interview 01
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She had wanted one photo as a record but did not like it when staff took a roll of photographs of the baby.
Mother of 4 children. She became pregnant for 5th time in 1993. Amniocentesis detected the baby had Down's syndrome. The pregnancy was ended by induction at 19 weeks.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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8+ years since pregnancy ended
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Interview 20
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Explains why she didn't want to see photographs of her baby though she was willing for photographs to be taken and kept with her medical notes.
She has had two children (1st and 5th pregnancies), 2 miscarriages and 1 stillbirth. She has ended 2 pregnancies. 2nd pregnancy: anomalies detected at dating scan, so she was scanned regularly. By 18 weeks multiple abnormalities evident- sent for amniocentesis. Pregnancy ended by induction. Post mortem identified multiple pterygium syndrome - a genetic disorder caused by both parents having recessive gene. 4th pregnancy: IVF treatment, scanned at 10 weeks and anomalies detected- sent for amniocentesis. Pregnancy ended at 17 weeks. Amnio identified Down's syndrome.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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5-7 years since pregnancy ended
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Interview 27
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The photos of her baby are all she's got and even though they show some facial abnormalities she is glad to have them.
Her 2nd pregnancy: she felt unwell throughout pregnancy. 12-week scan confirmed pregnancy viable. Amniocentesis identified Down's syndrome. Pregnancy ended by induction at 19 weeks. She had another baby 2 years later.
Pregnancy & children
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Ending a pregnancy for fetal abnormality
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1-2 years since pregnancy ended
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Interview 38
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She got upset when her aunts took photographs of her baby to send to their families.
Mother of 1 child, married to her first cousin. 2nd pregnancy: 12-week scan normal. 20-week scan detected anomalies in the baby's brain. Specialist scan confirmed multiple abnormalities. Pregnancy ended at 20 weeks by induction. Post mortem indicated baby had proliferative vasculopathy with hydrocephaly (Fowler syndrome). Sent for genetic counselling, established she and her husband carriers of gene responsible for syndrome. She was pregnant at time of interview.
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